Back to Basics: What’s Wrong with NAMI

Sera Davidow
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Dedicated to ‘Mental Health Awareness’ Month and all those things of which we truly need to be ‘aware’…

Recently I wrote an article about Autism Speaks (‘Smash the Blue Lights: Autism Speaks is a Danger to Self and Others‘) that referenced the National Alliance on Mental Illness (NAMI). In doing so, I presumed a fair amount of knowledge on the part of most readers regarding the many problems with said organization. However, what I very quickly came to realize is that the knowledge that I’ve come to know so well isn’t as shared as I’d thought. In fact, more than one commenter reflected on what is (and isn’t) understood about everyone’s favorite ‘mental illness’ advocacy organization.

Nami
Nami from ‘League of Legends’

One person said, “I was not aware of the ‘dangers of NAMI’. I’ll have to read about that … The idea that NAMI is harmful is a new one to me.” I appreciated this person’s openness to learning, but then another commenter pointed out that it’s pretty tough to even find critical information about this particular giant. As that commenter noted, doing a Google search on Autism Speaks automatically pops up the alternate search phrase of ‘autism speaks criticism’. On the other hand, the only alternate results that pop up on the first page of a NAMI search (that aren’t something generally positive about NAMI) are focused on some animated character with the unfortunate name of ‘Nami’ from a game called ‘League of Legends’. (As it turns out, this Nami character reportedly loves money even more than she seems to enjoy low-rise pants. Coincidence?)

It seems one mostly needs to already know what they’re looking for in order to find what I think of as some of the most established criticisms of this particular organization. And even with knowledge and intent, it can require some fairly persistent and advanced Googling efforts to unearth all there is to be found.

That is a problem, and all that follows is my best effort toward being a part of the solution.

NAMI & Pharma Sitting in a Tree

In case you haven’t heard, NAMI takes pharmaceutical money. A lot of it. And there’s a ton on the Internet about it (if you know where to look).

In 2009, the New York Times published an article called ‘Drug Makers Are Advocacy Group’s Biggest Donors’.  Earlier that same year, Senator Charles E. Grassley sent inquiries out to a number of so-called ‘disease and advocacy’ organizations — NAMI just one among them — requesting the disclosure of any ties to drug and device makers. Previously (and subsequently), NAMI had done its best to keep such fundraising details relatively private, but they did respond to this ask.

In fact, Grassley’s inquiry (and the resultant New York Times exposé) led us to learn that NAMI received about three quarters of their donated dollars from the pharmaceutical industry. Three quarters. (That’s about 23 million between 2006 and 2008.) Now, it’s worth noting that this wasn’t the first time this sort of information had been released. In fact, ten years prior, Mother Jones had obtained similar details and included them in an article titled ‘An influential mental health nonprofit finds its ‘grassroots’ watered by pharmaceutical millions.’ But apparently Mother Jones wasn’t mainstream enough — nor the 11.72 million from 18 drugs firms between 1996 and mid-1999 quite shocking enough — to elicit the sort of move to action that the Times piece did.

Since 2009, NAMI has claimed transparency by sharing the name of donors who contribute more than $5000 on their website, perhaps hoping the public would be thankful for at least that much and just move on. (Never mind that the manner in which they do this is largely inscrutable.) Peter Earley (among others) was also quick to jump to NAMI’s defense, publishing an article titled ‘NAMI and Drug Makers’ $$$’ in 2010. He claimed that the organization was surely not in any pharmaceutical pocket, and wrote about NAMI’s new ‘strict policy’ related to receiving drug company money. He even included a link to the policy, and to a detailed report on what NAMI had received in the last quarter and how it had spent those funds. Unfortunately, all those links are dead at this point, and if such policies and reports still exist, they’re certainly not easy to locate.

What you can still find (and quite readily, I might add) are annual reports. Take the 2015 NAMI annual report for example. It’s been six years since Michael Fitzpatrick, NAMI’s Executive Director at the time, was quoted in the above-named New York Times article as saying, “Everyone I talk to wants to have more balanced fund-raising,” and all we have to judge their progress by are six pages of mostly tiny-font scrawls detailing their ‘major donors’. While they claim openness and honesty, we’re left with data that requires quite a bit of insider knowledge and/or patience to fully analyze.

Sure, when browsing their corporate sponsors list, most will recognize names like ‘Eli Lilly’ or ‘Pfizer’ as large scale pharmaceutical companies.  But what about Teva (known better to most as a popular shoe brand), Lundbeck, Corcept Therapeutics and Actelion? Yes, those are pharmaceuticals, too. All told, of the 35 ‘Corporate Sponsors’ listed, 22 are pharmaceutical companies. Among the remaining contributors on the list are seven behavioral health and hospital management companies, one group specializing in genetic testing to match up individuals with the ‘best’ drug match (shiver), two schools (one of them expressly for psychiatrists and pharmacists), a billing company (dedicated to psychiatrists, psychologists and the like), and one beauty products corporation. Between the pharmaceutical lot, they are responsible for Klonopin, Adderal, Prozac, Zyprexa, Abilify, Effexor, and Thorazine (to name just a few). One of them (Allegran) is responsible for recent efforts to market Botox (yes, that Botox) for depression.

And all we know is that they donated some amount more than $5000. That could mean $5001, or it could (to take just one example) mean the equivalent of the 1.1 million that Eli Lilly gave to NAMI in 1999 alone.

Then we get to the individual donor names. How is one to analyze that? Who, for example, is to know (without some intentional digging) that the second donor listed — Robert Abel — appears to have direct ties to Pfizer? I suspect if one had the time to do the research, they’d find much the same among at least a handful of other donors and their spouses. Meanwhile, scroll down to the ‘Workplace and Matching Gifts’ section, and even more pharmaceutical names surface.

The Romance Continues

But if you thought that was all there was to uncover in this particular love story, you’d be missing some of the very best parts. It would be like watching the Princess Bride, but stopping before Wesley reunites with Princess Buttercup after yelling that identity-revealing “as you wish” whilst he rolls down a hill. Or missing out on the “I’m flying!” scene during which Leonardo Dicaprio embraces Kate Winslet as she stands at the helm of the Titanic. (This, of course, before the ship starts to sink.)

So, in case you didn’t know, there are many other ways for money to exchange hands beyond direct donations. And they don’t require such pesky things as public listings of who’s contributed what to whom. For example, a while back, another former NAMI president, James McNulty, reportedly received thousands from Pfizer and other drug makers for his participation in various events. Consider this excerpt of allegations found in a whistleblower lawsuit (per former Pfizer drug rep, Mark Westlock) as reported by CBS News in 2009:

During the time he was president of NAMI, James McNulty received thousands of dollars for regularly speaking on behalf of Pfizer and other drug makers at various company sponsored events. In an arrangement ethicists say is highly irregular, McNulty would process the “grants” through NAMI Rhode Island. In order to reduce paperwork, according to McNulty, the drug maker would then give NAMI Rhode Island a check and NAMI Rhode Island would in turn give McNulty a check. At no time did McNulty disclose to the audiences at his various speaking engagements, or to NAMI’s membership, that he was being paid to speak by drug makers.

But these are merely allegations, right?  Well, in case you’re interested, this turned out to be a part of the largest criminal and civil health care fraud action ever brought by the United States Department of Justice, and resulted in a $2.3 Billion dollar settlement, with $102 million divided between the various informants involved (Westlock just one among them).

But that’s not all. Remember that Mother Jones article I mentioned earlier? Well, there was more than just donation data mentioned in that one, too. In fact, one of the ways of ‘giving’ that the article uncovered was by loan of employee. For example, at least for a period in the 90’s, Jerry Radke, an executive employed by Eli Lilly, was ‘loaned’ to NAMI. In other words, he was on Eli Lilly’s payroll, but actually reported to and worked at NAMI headquarters, engaging primarily in ‘strategic planning’. I can’t help but wonder what that looked like.

Oh, and don’t forget, if you look at NAMI’s annual reports not only are these sorts of ‘arrangements’ left out, but you’re also only seeing donations that go to NAMI National. And, of course, NAMI’s full model includes state chapters and affiliates. Hundreds of them. In 2010, Senator Grassley followed up his 2009 inquiry by also asking state-based NAMIs to report on their donations. Turns out they receive pharmaceutical dollars, too. According to research found on Mindfreedom, Inc., California came in first that year with $632,000 in donations recorded.

A Pharmaceutical Nail For Your Drug-Filled Coffin?

Still have your doubts about whether or not pharmaceutical interests are driving NAMI? Well, don’t lean solely on me to draw your conclusions. If you’re concerned that I (or my various sources) are somehow skewed, then why not go right to the pharmaceutical industry itself?

I love to quote what I’m about to quote, so if you’ve read some of my earlier articles, you’ve perhaps seen it referenced before. (In fact, it first appeared in my blog, ‘Dear NAMI: My Apologies. I’ve Been Unfair, where I examined pharmaceutical linkages with Mental Health America and other advocacy organizations, too.) It’s my favorite ever Google find.

The article is ‘Public Relations: Why Advocacy Beats DTC’ by Pharmaceutical Executive Josh Weinstein. It was published in 2004 on Pharmexec.com, an industry website. The article centers on the idea that ‘Direct to Consumer’ advertising sure is a pain because of such pesky things as the requirement to disclose potential negative effects, but that working with advocacy organizations is “one of the most accomplished means of raising disease awareness and enhancing the industry’s image as a deliverer of new and tangible value to patients.”

More from Weinstein:

“I have witnessed that the most direct and efficient tool for driving long-term support for brands has been, and continues to be, a well-designed, advocacy-based public education program.”

Great. And in case you didn’t make the connection on your own, when pharma execs refer to ‘advocacy organizations’ they are referring to NAMI. (Well, and Mental Health America… And the American Association of Suicidology… And Children and Adults with Attention-Deficit/Hyperactivity Disorder… And… Well, I digress.)

Sheila Rothman, Victoria Raveis, Anne Friedman, and David Rothman also conducted a study of disclosure practices between pharmaceuticals and what they referred to as ‘health advocacy organizations’ (HAO) in Government, Politics, and Law (April 2011, Volume 101, Number 4). Of note in their review, they reported:

Lilly’s grants went primarily to HAOs working in its areas of therapeutic interest and in areas related to its best-selling products. Lilly has acknowledged this type of correlation between its business interests and its grant giving. Its ‘‘Principles for Interacting with Health Care Professional Associations’’ state that grantees should be committed to ‘‘market oriented solutions to important health care issues’’ and that Lilly expects to ‘‘build long term relationships…based on mutual support.’’

This same article cited disappointing realities about the circulating claims of transparency for NAMI and pharmaceutical companies alike:

Only 25% of the HAOs that received Lilly grants acknowledged Lilly’s contributions on their Web sites. Only 10% acknowledged Lilly as the sponsor of a grant event. None disclosed the amount of a Lilly grant. Thus, in most cases, neither policymakers nor the public can readily learn about the financial relationship between an HAO and Lilly.

This lack of transparency is disappointing because, either by design or through a convergence of interests, the HAOs in the current study pursued activities that promoted the sale of Lilly products. In the area of neurosciences, Lilly gave NAMI $450000 for its Campaign for the Mind of America. NAMI has advocated that cost should not be a consideration when prescribing for patients. ‘‘For the most severely disabled,’’ insisted NAMI, ‘‘effective treatment often means access to the newest medications such as atypical antipsychotic and anti-depressive agents…. Doctors must be allowed to utilize the latest breakthrough in medical science…without bureaucratic restrictions to the access for life-saving medications.’’ To the degree that NAMI’s campaign succeeded, the market for Lilly’s neuroscience drugs expanded.

STILL not convinced? Think Mad in America and all of its authors are somehow too ‘anti-psychiatry’ (or something) to be trusted? Well, erroneous assumptions aside, perhaps you might be more comfortable considering the words of someone who is decidedly pro-psychiatry in its current form, Mr. DJ Jaffe. Jaffe speaks directly to his own concerns regarding pharmaceutical influence over NAMI in his article, ‘Does the National Alliance on Mental Illness represent seriously mentally ill?’  Therein, he cites several examples of influence. Here are just a couple:

When Sandoz (ADR) marketed Clozaril, the first atypical antipsychotic, they tied buying the medicine to buying blood monitoring services from their subsidiary Caremark. This greatly inflated the price and made it harder to get. Everyone—but NAMI—was outraged. Medicare and states were refusing to pay for it. Hospitals wouldn’t administer it. Attorney Generals were suing. The Wall St. Journal and NY Times reported on the problem. Yet NAMIs position throughout was “we need more information”. Sandoz was a major NAMI funder.

When Eli Lilly the makers of the atypical antipsychotic Olanzapine came out with a ‘scholarship program’ (educational grant scholarships conditional on taking the drug), the NAMI membership was instantly revolted by what was in essence a bribe to take it (why not lower the price, rather than inflate it to pay for the bribe?). In addition, what would happen if you went off the med? Lose the scholarship? Dr. E. Fuller Torrey brought the concerns to the media’s attention in the New York Times, in the same article, NAMI issued supporting communications. Eli Lilly was a NAMI contributer.

Thanks, Jaffe! You gotta know we’ve fallen pretty far when Torrey and Jaffe seem worth recognizing in a debate about the merits of NAMI.

Not All About the Bank

Everything to this point has been about money, but really, it’s about so much more than that. If it were all as simple as ‘the bigger NAMI gets, the more effectively they can promote psychiatric drugs, thus the more the pharmaceuticals give them, thus the bigger they get’, then the point of interruption might be a bit clearer. But, really, in such a case as this, all that cash means something far greater: power and voice. It means they get seen.

NAMI has the money to make commercials, host high profile events, and launch national campaigns. They have the time and energy to lobby for legislation and lure in corporate partners to sign misguided pledges… because, you know, everyone’s doing it, and you’ll look like you don’t care about the issues if you don’t! When the media (or the White House) is looking for an ‘expert’ on ‘mental health’, NAMI springs to mind because… well, brand recognition. Money begets voice, and voice begets money. That’s just the way the story goes.

All the while, we — who are influenced by real life experiences and the desire to improve lives (rather than fatten pockets) — are stuck standing in the shadows. This is NAMI’s legacy. Started by parents huddled around a table in 1979, they’ve made their business on talking about us without us while advocating to put our lives on (a sometimes eternal) pause.

Dear Everyone, We’d be Heard Even Better If You’d Kindly Just Shut Up. Love, NAMI

NAMI calls for our silence in multiple ways. One is through the use of force. Some argue that ‘certain NAMI chapters are better than others’, and that’s undoubtedly true, but here’s some of what NAMI’s current CEO (Mary Giliberti) had to say in an article (‘NAMI CEO Answers Critics; Defends Actions & Outlines Top Priorities and Achievements) by Pete Earley published in January of this year:

We share your gratitude about the enactment of HR 2646, the Helping Families in Mental Health Crisis Act. … NAMI worked hard and generated hundreds of thousands of petitions, emails, tweets, calls, and letters to members of Congress to make sure the voices of the mental health community were heard.

We were told personally by Hill staffers that the overwhelming numbers of communications from the grassroots had a significant impact on keeping the bill alive and moving it through the lengthy process. Additionally, our staff spent many hours behind the scenes communicating with our state and local affiliates and members, many of whom were receiving misleading information from opponents of the bill.

For anyone not in the know, HR 2646 is more popularly known ’round these parts as the Murphy Bill. It promotes force, violations of privacy, and the virtual elimination of funding for anything not medically driven. Our movement has spent years fighting vehemently against it. We lost that battle just recently when it was snuck underhandedly into the ’21st Century Cures‘ act and passed practically overnight. And NAMI was a huge part of that, using all their muscle to push us aside, and portraying us as little more than purveyors of ‘misleading information’. Pesky little flies to be ignored or swatted away, no matter how much we stood to lose.

When I read documents such as this — or recall how NAMI (both local chapters and national) have lauded Representative Tim Murphy for his relentless efforts to push such harmful legislation — I’m reminded that nothing has truly changed with them. And why would it?

We have to remember this: NAMI is a lobbying organization. As detailed in an article, ‘Pharmaceutical Industry Agenda Setting in Mental Health Policies’ by R. Gosden and Sharon Beder, NAMI (alongside many of their pharma friends) has appeared on the client list of one of the world’s largest public relations companies (Nelson Communications Worldwide). And frankly, at this point, they’ve fashioned themselves into their own PR experts.

We see this play out in their pharmaceutical ties, and we see this in Giliberti’s words. They are deeply invested in their identity as the “nation’s leading voice on mental health” (as it reads on the ‘about us’ page of their website). And, as any public relations specialist will tell you, lobbying organizations of this nature do best when their message is crisp and clear.

In other words, NAMI has a lot to lose by muddying their message with other voices or broadened perspectives. It’s not just their investment in the medical model, or the normal human resistance to ‘change’ that’s at stake here. It’s the fact that their singularity in purpose is precisely what has gotten them so far. Making space for us in a genuine way doesn’t necessarily mean just having to learn to share the table, but that the table may crumble and fall if they pull up too many more seats.

So, Don’t Talk to Me about the Merits of NAMI

Don’t talk to me about the merits of NAMI until they stop telling me my ‘mental illness’ is just like diabetes, while promoting psychiatric drugs that cause just that (or until they stop blindly calling us ‘anti-science’ while refusing to look at the facts themselves).

Don’t tell me about the NAMI affiliates that are the ‘exception to the rule’ until NAMI National stops prioritizing forced drugging. (Until that point, it’s hard to imagine that the ‘good’ parts are doing much more than bolstering the profile of the harmful whole.)

Don’t point me toward the slight improvements or ‘gives’ they’ve made on their website, until they delete their section on ‘anosognosia’ (a legitimate medical condition related to strokes and the like that has absolutely nothing to do with ‘lack of insight’ for people with psychiatric diagnoses and serves only as another way to devoice the voiceless, and justify more drugging over individual objection).

And certainly don’t suggest I’d do more ‘good’ trying to change them from the inside, until you show me that they actually want to give up their hoarded power, rather than use my name and work to say “Hey, look, we’re not so closed minded” while they continue on their merry way, dragging me along behind them.

Calling All Good Citizens of NAMI

And none of this means that there aren’t good people lurking among the NAMI masses. Often there are not only good but desperate people aching for help. These are, after all, NAMI’s (and the pharmaceutical companies) favorite prey, sucked in by promise of finding answers (and a complete void of other options).

In fact, it’s likely that most people connected to NAMI are decent and well intended. And as with any group where good people can sometimes gather and support one another, help has happened along the way. It’s just that they’ve also been a part of creating (or sustaining) a monster that’s taken on a life of its own, and is doing far more harm than good.

And, if you think I’m foolish, or ‘too extreme’… If you, after reading all this, find yourself unmoved to even begin questioning NAMI’s reason for being, or your involvement (personal or professional) with them… I’d ask you to at least give some thought as to why you’re so invested in holding on to your frame.

Turning NAMI on its headThe Autism community has done a much better job than we have at forming groups that aim to turn their nemeses on their heads. At this very moment, I don’t feel particularly hopeful about our potential for success at overcoming such lobbying giants (NAMI, MHA, and all the rest), but for today, this is my best step forward.

What step will you take?

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106 COMMENTS

  1. Hi Sera,

    thanks for the insight. As my wife and I have gotten closer to what I hope is the end of her/our healing journey, I contacted the area NAMI rep last year, thinking maybe I could team up with them and start a support group in my town. I had already begun to reconsider that decision because of other things I’ve read here. It’s just so frustrating the depths of influence and manipulation going on in so many areas because of the greed of big pharma and the willing partnership of family members who clearly don’t have the best interest of the one’s they ‘love’ in mind, sigh…
    Sam

  2. It is my view that merely protesting the APA is not enough, we need to be demonstrating against NAMI (and other hate groups) as well. It is no longer proper PC, and chiefly because of the lobbying efforts of NAMI, to pin the “illnesses” of children (some of them “adult”) on the “sins” and abuses of parents, but there have to be plenty of children haters within the ranks of the NAMI hate group. NAMI promotes forced treatment (human rights violations) and takes money from drug companies. NAMI encourages a obsequious compliance in victims of psychiatry, the mental health system, and NAMI. You want to right this situation? Well, we are well on the way to doing so when we capsize NAMI. Need I say more?

    Thanks for this post and report, Sera. As with many, but not all, of your posts, this one is right on target, and the kind of thing we could use more of. Keep ’em coming!

  3. Thanks for this very informative article Sera. We do not have NAMI in Canada, but my husband and I attended a support group at our local hospital that seemed to have a very similar mission. The person running the group was very adamant that everyone should always be taking their medication as prescribed by their doctors. There was a woman who attended who was always talking about alternatives such as diet, exercise, supplements, yoga, etc. She was asked to leave the group and we stopped going after that as well. I was very disappointed that the leader was so negative towards alternatives when many in the group seemed very interested. I wish we could find a support group in our area that is not attached to a hospital. MIA is the best support group we have found for people with open minds looking for real answers. Thank you!

    • madinCanada. The Canadian version of NAMI is a threatened organization, because the ISF, which promotes nutrient therapy, is growing in strength there, if the increasing number of orthomolecular practitioners in that country is any indication, according to the ISF’s practitioner list, which lists pages of such practitioners in every province, instead of a handful throughout the country. That’s why the enthusiastic woman likely was kicked out of the group you attended; she was advocating the techniques of the orthodox group’s arch rivals.

  4. thank you so very much for this article. NAMI is a big threat to people with labels and distress, especially those of us who would very much like to decline all the “help” the so-called “helping professions” have to offer, often based on horrible personal experiences.

    Your mention of the “Murphy Bill” got me to thinking a bit. Isn’t it interesting how there’s a growing number of people who are absolutely disgusted by Mental Health, Inc., society as a whole seems to be shifting back towards a degree of skepticism towards all thing Mental Health, and yet…the politicians who oh-so clearly work for the 1% want everybody (and their mama) on “the miracle meds” ?

    Thanks again for the informative, well-written article.

  5. Sera:

    I am a parent who attended (but later dropped out of) NAMI’s ‘Family-To-Family Educational Program.’ Participants like me were each given a Second Edition version of ‘Family to Family’ written by Joyce Burland Ph.D. National Director of the NAMI’s Family-to-Family Education Program. The study guide clearly states that the development and distribution of the materials was directly funded by an ‘unrestricted education grant from Bristol-Myers-Squibb and Otsuka American Pharmaceutical Inc.”

    It was very traumatizing to read controversial medical propaganda in the packets we parents were given, such as a copy of a controversial article by Daniel Goldman providing ‘irrefutable proof” that schizophrenia is caused by structural abnormalities of the brain. No opportunities to discuss the validity of this junk science was provided to parents like me who have read articles refuting this evidence. No alternative treatment modalities were discussed and no paradigm other than the medical disease model were presented as the basis for diagnosing and treating extreme states known as ‘psychosis’

    Educational alternatives are starting to crop up here and there. For example, parents can take a class entitled ‘Families Healing Together’ offered by the Foundation for Excellence in Mental Health, which stands in stark contrast to NAMI’s educational program. Educational approaches which stress recovery, hope, psycho-social approaches, and the role played by trauma, grief, and shame are infinitely more helpful but are in their infancy.

    I think activists for human rights in the mental health system (as defined by choices and alternatives to the medical model because how can their be rights if there are no choices?) should target national and state NAMI organizations for direct action as David Oaks and other activists did when they fasted and called for the APA to provide proof that mental illness is caused by a chemical imbalance) and seek to build coalitions with other consumer advocacy organizations who, like us, do not accept industry funding. I hope MindFreedom affiliate organizations will take the lead in organizing such actions. Since MindFreedom is one of the few consumer/survivor organizations left standing which does not receive any ‘system’ funding, it think MindFreedom is uniquely positioned to lead this effort but it would be helpful if activists who working for organizations which do accept system funding would renew their MFI memberships and/or renew their commitment to direct action.

  6. I created an account just to comment on this article. I have been affiliated with NAMI in some fashion for 7 years. I can assure you that I have NEVER been told which drugs to take and / or that drugs are the complete answer. In fact, I have never been told anything from NAMI about particular drugs at all. No information pamphlets on drugs… No classes on them, etc. Most of the classes and informational seminars are on subjects outside of chemical treatment. Such as meditation or CBT. Any number of other ways to treat the illnesses people suffer from. NAMI has been a great resource to my family and to me (a consumer) and aside from helping me come to terms with an illness and encouraging that I listen to recommendations by a psychiatrist, NAMI has done nothing to sell me or feed me drug information. Would like to hear your comment to this. I hope this sheds light on NAMI from an inside perspective.

    • As a “consumer”, “Michael_C”, your JOB is to CONSUME as much PRODUCT as the PRODUCER can PRODUCE. And what exactly is that “product”? Well. neuro-toxic DRUGS, and so-called “services”. Drugs are drugs are drugs are drugs are drugs….. At least you don’t use the deceptive euphemism “meds”. And, as for the DSM, which I’m sure you’re aware of, – ALL of the so-called “diagnoses” in it are bogus and INVENTED. They were NOT discovered. They serve as excuses to write prescriptions, and bill for “services”. The DSM is a catalog of billing codes. So-called “mental illnesses” are exactly as real as presents from Santa Claus, but not more real. Psychiatry is a pseudoscience, a drug racket, and a means of social control. It’s 21st Century Phrenology. Of course NAMI has been a “great resource” to you and your family. You are the TARGET audience. If you don’t mind being targetted, propagandized, and CONSUMED, then I suppose you have that right. But please don’t expect the rest of us here at MiA to follow you. I have 4 decades of lived experience, the last 2, drug and shrink-free. Long-term use of psych drugs ALWAYS results in worse outcomes. You’ve only got 7 years. Wait until 10, 15, 20, 30, 40+ years…. The drugs will increasingly disable you, and lead to a decades shortened life span. To quote Kurt Vonnegut, “So it goes….”….
      Respectfully,
      ~Bill./

    • “The best way to control the opposition is to lead it ourselves” said Vladimir Lenin.

      Thats the NAMI method.

      Where was NAMI when boys were growing breasts from Risperdal ?
      Where was NAMI when Eli Lilly was busted in the Zyprexa scandal ?
      What does NAMI have to say about the abusive psychiatric inpatient hellholes run by Universal Health Services ?

      No matter how outrageous the crimes against people accused of mental illness perpetrated by the psychiatric or pharmacuitical industry NAMI is SILENT every single time. Total silence.

      “The best way to control the opposition is to lead it ourselves” and who leads in NAMI funding ?

      Love it, hate it or even not care about it but Alcoholics Anonymous has been around much longer then NAMI its funded by dollars in the basket. Go to a business meeting unlike NAMI there are no secrets. X amount of money comes in from the basket and coffee and X goes out for expenses.

      Imagine if AA decided it was against the human rights of people suffering from alcoholism and went to Washington to get laws removing the rights of people suffering from alcoholism. How many dollars would go in the basket following that ? Zero real quick.

      NAMI needs to go so something real can maybe take its place but that pharma and hospital franchise money keeps it going.

      • This is a great point. They’re not all about trying to help us. They get behind laws that take away our human rights. The right to decide whether we want to take drugs with horrible side effects. These laws are unconstitutional. Where is the ACLU on this? We need to start challenging these laws in court.

        The only thing that made the s.m.i. clinic back down in my case was an attorney my parents hired for me. This is their Achilles’s heel: what they are doing to us is ultimately unconstitutional.

        This is really no different than a woman’s constitutional right to an abortion. This is my body and I should have the right to decide whether or not I want to put toxic drugs with harmful side effects in it or not.

        We need to get a class action lawsuit going.

    • I think it’s also important to clarify that not all local NAMI branches are as bought out as national NAMI. NAMI Santa Cruz (or maybe Santa Clara) used to have an awesome website with lots of empowering articles and discussion boards. But they don’t appear to any more.

      I encourage you to look on the national site and see how many times they talk about “biological brain diseases” and how infrequently traumatic experiences like child abuse are emphasized as causes. See how supportive they are of forcing “treatment” on the unwilling and how often they talk about “anosognosia” and how little they talk about hearing voices groups and peer support (except in the context of supporting peers in following their psychiatrist’s orders). They have improved somewhat since the late 90s when I first encountered them, but the national website is loaded with inaccuracies and power trips that have nothing to do with those who willingly or unwillingly engage in “mental health services.” The unquestioning support for enforced outpatient “treatment” (aka forcing drugs on people who aren’t even endangering anyone just because the psychiatrists think they MIGHT some day be dangerous) should be enough to convince any objective person that they are at best very far down the wrong track. Looking at their Big Pharma connections just explains why.

      So yes, lots of people have found local NAMIs helpful, though lots have also found them awful. But national NAMI does not represent the “mentally ill,” it represents their family members and the pharmaceutical industry. Which is a VERY dangerous combination.

      — Steve

    • Michael: I taught NAMI’s Family to Family for 8 years. The curriculum is standardized to the point that teachers read the script from the manuals. And we covered loads of meds info. NAMI is also where my husband learned to tell me, “Take your meds as prescribed or I will leave you.” (In the end, he decided he was “a woman in a man’s body” and I moved out, but that’s sort of another story …) After I left him, I’ve been able to titrate down my dosages with the help of a different MD in a region of the country that prescribes more conservatively. Now I take 3 pills a day instead of 15 (!!!) and am again professionally employed. So I’m not sure what NAMI course you could have taken that didn’t spend loads of time reviewing how different meds function, but it’s not the one I taught.

      • I too am on very low doses of medication. According to my psychiatrists, I’m ‘lucky’ in that way. I ascribe it to my effort, personally, but still, out of all of them, he is willing to help me reach sub-“therapeutic” level of medication, which has worked and continues to work for me. The chapter of NAMI that I work for is in the Bay Area, and, yes, during some of the classes, people “read” through the binder’s information, but people are free to accept or reject the info. I’m no dummy and when I hear something out of place, I know it. The class I have taken is for the Peer to Peer program, which I have spent the last year doing with great success for my Peer Pal. I consider NAMI, just like any other company. Look at Chevron… Polluting the planet, but still people need gas, right?! I feel like NAMI fills the void for questioning parents and possibly some individuals who suffer from some degree from mental anguish. You can use their services, or find another gas station.

        • I consider NAMI, just like any other company. Look at Chevron… Polluting the planet, but still people need gas, right?!

          No, people need better public transportation and renewable energy. This is actually a pretty great analogy, though. Psychiatry and Big Pharma – and by extension, NAMI – are standing in the way of people getting actual help with their problems, just as the oil companies are standing in the way of all of us getting better public transportation and renewable energy. And both problems are caused by the profit motive.

      • (In the end, he decided he was “a woman in a man’s body” and I moved out, but that’s sort of another story …)

        Yes, that is an entirely different story, and it’s unfortunate that you felt the need to include it here. That said, congratulations on your successful tapering and new employment.

  7. This is the best way I know to communicate to Sera Davidow. Sera, I’m requesting that the MiA site admins give you my email, so you can contact me directly. Last week, the local CMHC hosted a showing of “God knows where I am.” It’s the story of Linda Bishop, and it was hideous propaganda. The film makers were pigs. Yuck.
    But anyway, I saw the piece on you in “The Sun”, which I purchased at the local Co-op. It was excellent. After I read it, I was able to give it to Mr. Phil Wyzik, who is the Director of “MFS”, – Monadnock Family (…and mental health…) Services. He actually READ the “Sun” piece, and was impressed. He mentioned your use of “extreme states” as being particularly eye-opening for him. I think he would be VERY receptive, if you contacted him.
    Also, I spoke at a recent Keene City Council meeting, against the abuses of some of the local “agencies”, MFS chief among them. We’re at a unique point in time. We can knock the system back here, if we work together. RSVP? PLEASE!?… ~Bill./

  8. For many, many years, the most active local NAMI member was a father who sexually assaulted/molested/raped his young daughter. When she got old enough to report what he did to her, he took her to a psychiatrist, had her labelled, “diagnosed”, and put on heavy psych drugs. All so nobody would believe her. “Oh, she’s just “mentally ill…”…. Some of NAMI’s most tireless workers are covering up their own CRIMES, and further victimizing the VICTIMS. With the complicity of psychiatry…. NAMI is EVIL….

    • Yes. Either it’s, “Billy only says we beat him. He’s crazy. Don’t believe him.”

      Or, if people catch them in the act it’s, “So what if I verbally abuse Sarah and put her down in front of friends? She has a screwed up brain, so it’s not my fault she’s crazy.” (Not like WE feel things anyhow!)

      Either way, NAMI enables abusers!

  9. Thanks so much for this Sera! I think you’re right — however many good people and even “good chapters” there may be at the grassroots, the national organization is so thoroughly captured by the pharmaceutical industry that it’s hard to even wrap your mind around. As a matter of fact, the industry relies on NAMI to speak for them, making claims for their products that they can’t legally make, and saying things that would be spotted as self-serving if the industry said them.

    Here’s the link you may have been searching for BTW, to get NAMI’s major corporate contributors:
    https://www.nami.org/About-NAMI/Our-Finances/Major-Foundation-Corporate-Sponsorships

    Their biggest contributor of late — $575K to be the national Premier Sponsor of NAMI’s fundraising walks — is Alkermes. I know. You never heard of it. Their business? Depot injections — which in 90% of cases are used for involuntary treatment. Alkermes makes Aristada, a 90-day depot Abilify injection, and Vivitrol, a 30-day naltrexone depot injection for opioid addicts which is being heavily marketed to prisons. They also own the patents on depot-injection technology used by several other companies. Prior to that the National NAMI Sugar Daddy Extraordinaire was Otsuka, makers of Abilify and Abilify Maintena (depot injection).

    The scandal-plagued for-profit hospital chain UHS (Universal Health Services) has given National NAMI $85K a year for the past few years. Their local hospitals have also formed close relationships with NAMI in numerous cities. In short, NAMI’s drug-money problem has not eased up at all in the past few years — if anything it has deepened. And it needs to be called out. They are an 800-lb gorilla in the media and PR field, with an awe-inspiring power to promote certain agendas and shut down others.

  10. I am just checking in and sorry commenting before reading the entire article but I have been on the NAMI website forums and its just a horror show.

    It was even worse before the new site where they seem to have erased the years and years of posts.

    Its always the same thing “Psychiatric drugging has done nothing but make my child worse but YOU should keep trying it on yours”

    Another group seems to be taking up the child drugging market https://www.understood.org/en

    NAMI seems to be in charge of human rights removal in adults accused of mental illness but this “Understood” website is doing the same crap and the ADHD forum its the same horror show with “psychiatric drugging has done nothing but make my kid worse but YOU should keep trying it on yours”.

    WTF if 9 in 10 testimonials on child drugging are nightmare wake up, it is a sucker bet !! They cant see that.

    I am an adult who survived psychiatric hell and when I read those forums the drugs and dosages they are inflicting on these kids I just cringe. And its so obvious they don’t know WTF they are doing the drug combos inflicted on some of these kids its like they rolled dice to pick them out cause they make no sense.

    This website Understood is flying under the radar and I think MIA should start calling it out. Its the same sneaky approach to pushing drugs on kids but the website designers I have to say did an very nice job making it look pretty and inviting and helpful and caring.

    I will go further and say they did an awesome job at making it look pretty and inviting and helpful and caring but they are same snakes and regulars around here will easily see the same old sneaky marketing methods used get as many kids labelled and drugged as possible.

    I lightly researched them and the dirt is miles deep. I vote for Sera to make Understood.org her next article on MIA.

  11. Frank is on target about making NAMI a focus of any eventual move we might make as a movement, which might be more personal and directly confrontational, and less symbolic than simply shouting outside whatever opulent palace the APA is inhabiting during its annual corporate celebration.

  12. Hi Sera.

    Thank you for writing this article.

    I was an active volunteer and a board member with NAMI for a few years. I stepped away when I realized just how drug and disease brain oriented they are.

    Sometimes when I think of my local chapter, I think of a couple of demotivational sayings I once read; “None of us is as stupid as all of us” and “Never underestimate the power of idiots in large groups”.

    I’ve found with my fellow board members, if I engaged one on one, they would consider another point of view. Whenever we met at a board or general meeting, forget it. I’ve met brick walls that have more give.

    Same thing with several members. One on one they would listen to reason. In a large group with fellow NAMI mommies, not a snowball’s chance.

    We need more people who are willing to stand up and speak out about their horrific experiences with this organization. I had some drag down knock out fights with the local chapter prior to stepping away. Sometimes I feel like the only voice of reason in the county where I reside.

    I really appreciate your article. Thank you for stating the facts about NAMI.

  13. Thanks for what seems like a constructive and fair way to get us to consider the organization. You laid out these facts and are working to get accountability. I hope members of NAMI, see that you are not burning them down, rather than getting them to be more accountable. So thanks.

    Harvey Rosenthal, from New York Association for Psychiatric Rehabilitation Services.
    shared this article from the New York Times https://www.nytimes.com/2017/05/24/health/mental-health-czar-elinore-mccance-katz.html?_r=2 explaining how the Republicans and Trump, and endorsed by NAMI – a new mental health czar for mental health reform, who is some kind of recovery model skeptic. I realize there are lots of skeptics on this model, but at least there is a general progressive direction with it.

  14. Hi Sera,
    Thank you for this much need summary about NAMI and other big mental health organizations’ ties to Big Pharma. As a peer, a parent (who helped to successfully keep her young adult son out of the system 3 years ago when he had what he called an existential crisis at the age of 19) and as a person working as a peer-professional leader in the system that you describe, you have again given me much to think about. I keep hoping we can make change from within, but it reminds me of trying to make change within our political structures that are so controlled by Big Money and lobbyists. My eyes are open and I hope to either find real value in my work to create true alternatives in the system or find other work. Thank you for all you do to light the way.

  15. Thank you for your community service in challenging NAMI corruption; however, I disagree with you, Frank and Oldhead about making NAMI a focus of criticism. Our society holds medical science in highest esteem; it seems ill-advised to focus criticism of mainstream “mental health” care at NAMI for advocating support for medical science (and their “medicines”).

    I contend that the harm caused by mainstream “mental health care” can be directly attributed to legitimized pseudoscience: psychiatry accepted as a legitimate medical science. Medical schools are having problems with students who “bash psychiatry as not real medical science;” these students are our greatest allies. Medical schools legitimizing psychiatry is our greatest and weakest enemy since they pride themselves on real science.

    • I disagree with you, Frank and Oldhead about making NAMI a focus of criticism.

      No idea where you’re coming from with this, though I suspect that you think that this is an argument about good vs. bad “science” going on here, and that the most logical side wins. This disregards the fact that psychiatry is primarily about social control and domestic repression, and that NAMI is probably the most effective (ostensibly) non-governmental organization responsible for enslaving people to psychiatric drugs and the corresponding ideologies of self-hate (“diagnoses”), which it encourages people to internalize. Psychiatry will only go away when it is rejected by those it professes to serve. NAMI is there to solicit “consumers” of all this. Why in the world would it NOT be a primary focus, not for “criticism,” but for concerted ACTION?

  16. When I was a NAMI zombie I actually applied for the Eli-Lilly grant. It had been expanded to include psych drugs besides clozerol. I certainly was drugged and compliant! I was “high functioning” or intelligent too. Psych staff would yell at me for bringing books to group or asking the wrong questions. They don’t like questions from nuts even if you buy into psychiatry as a legitimate science–as I did.

    My question is how has the scholarship fared? If you’re drugged up–as they insist–it’s nearly impossible to go to school. I wouldn’t be surprised if, due to the high failure rate of the people who receive it and lack of applicants who think they can better themselves, they quit awarding it.

    The Mental Illness makers really don’t want you to succeed anyhow. The LAST thing they want is for anyone they “help” to get better and lead a healthy, productive life. If they knew how, they’d probably apply electrodes directly to our brains to wipe out our literacy skills. Or, better yet, drug us into permanent comas!

  17. Nice to see another article from you. There are a lot of rural counties that only have a Nami or dbsalliance or they may not have either as an option.

    You do get a lot of recovery minded people in the country.
    Absolutely other natural community support group options would be a good thing.

    • Since when has NAMI been about change? It’s all about control and selling drugs. Telling folks they’re worthless and hopeless. That they will always need drugs that make them sick and mentally disabled–in my case more out of touch with reality than when “treatment naive.” If you die from the treatments NAMI doesn’t care as long as you die drugged.

      As far as adversaries go NAMI made the choice to be a hate group. You’re only welcome as a sort of pet or mascot. As a worthless “consumer” you’re a nonperson and have no voice at all. The NAMI mommies run the whole show. They lie when they say they’re against “stigma.” The truth is they do nothing but promote stigma and hired Jaffee to launch a smear campaign against the “mentally ill.”

  18. It took me so long to realize that the psychiatric community in general was not doing what was in my best interest when I was diagnosed with schizophrenia and subjected to forced drugging. My well meaning but hopelesly misguided parents thought they were helping me by pursuing the euphemistically shrouded term Assisted Outpatient Treatment. When I complained to them about my symptoms what I now know were the side effects of the meds– akathisia and tardive dyskinesia– my parents were told that these were all just manisfestations of the brain disease Schizophrenia. They attended a local support group aranged by NAMI that was adamant that I must always take my meds or else the brain disease schizophrenia would continue to progress and I would get even worse. And they made it clear to my parents that I was not to be listened to or taken seriously at all because I was crazy after all. After the psych nurse at the cheap s.m.i. clinic I attended increased my dosage of geodon to the max, I ended in the E.R., and a regular nurse told me what I was experienced was caused by the meds. I then started to research the side effects of geodon online and found so many people who were experiencing the same thing. After a lot of discussion, my family finally decided to help me get off the meds. They ended up hiring a private attorney and the local s.m.i. clinic didn’t want to pursue it in court against a real private attorney, so they dropped me from assisted outpatient treatment. And then I had to go to a private psychiatrist who helped me taper down off the meds. I still got withdrawals, but now I am finally free from the horrible meds. I am still mentally ill, but I know how to cope with it now without resorting to drugs. They need to remember that there was a time before all these meds, and many people who had schizophrenia survived the disease back then without the meds.

    • Epthe

      Yes, before the advent of the drugs about 60% of people recovered from what the system likes to refer to as “mental illness”. About 30-35% of people didn’t seem to be able to make this move. But the amazing thing is that many people had only one more occurrence while many never experienced anything after the first episode.

      Of course the system doesn’t like to talk about these statistics since it’s very embarrassing that today’s recovery rate is only about 16%. If the drugs are so good and the treatment is so wonderful, why isn’t there a better recovery rate?

  19. For my part I never was psychotic–till psychiatric drugs got involved. I no longer am. As long as I remain drug free it’s a safe bet I won’t hallucinate.

    I want to write a mainstream novel about a NAMI mommy and her complex motives in “helping” her unhappy son. I will start a forum thread about this project.

  20. BC Canada’s equivalent to NAMI is the British Columbia Schizophrenia Society (BCSS). Please search the links between them and Otsuka Pharmaceuticals. Same story: BCSS is strong lobby group for discriminatory mh acts which deny mental capacity, legal capacity, informed consent and promote forced drugging, disease vs. psychosocial model, and allow the “sane” to control finances and make decisions for others about where one is allowed or not allowed to live. Sad that treatment advocacy groups can’t see that their expensive media campaigns of fear and discrimination ensure the failure of their expensive “anti-stigma” campaigns. Lots of waste.
    A nurse who advocated in the early 1980s for a shift from the medical to the social model of support for children labeled with cognitive disabilities, described parents who were so afraid to lose the medical institutions and treatments that had housed and raised their children. Some parents fought for the continued use of these hospitals and their methods such as using electric cattle prods to “successfully” teach their children skills. People are always afraid to lose what they have, even if what they have is not good. This is happening now. Maybe sometime treatment advocacy people will shift their thinking and employ some of that imagination, which so much of their literature decries, to imagine something more humane than the equivalent of electric cattle prods to support their unruly family members. Then, perhaps, they can consider giving up their reliance on forced psychiatry: depending on police and doctors to use the restraints, isolation rooms, involuntary ect and forced injections of blunting and potentially hazardous drugs to control their unruly family members.

  21. Sera,
    Great article; I enjoyed reading it!

    The penetration of drug money and associated medical model terminology into NAMI is so complete and deep that it’s hard for many inside the organization to know what has happened to them… it’s like, how does a fish know it is swimming in water? It is all it’s every known. From such a fish’s perspective, there is no sense or memory that things could be radically different; for example, that a mental health organization could be independent and could act as an ethical check on the excessive drugging pushed by the corporations. Instead, it’s all about “confluence of interest” (to use the unforgettable term used by a psychiatrist whose name I forgot, but who tried to rationalize drug money “conflicts of interest” as confluence as interest, to Marcia Angell’s disgust).

    The bottom line is what you said: Nami and drug money go together like:
    – a zebra and its stripes
    – a cheetah and its spots
    – a fish and water
    – a Somalian pirate and a rubber dinghy

    There is no way for Nami to change, because its growth and function has been entirely predicated on ingesting poison – i.e. drug money with the implicit expectations that drugs and the disease model be promoted. To let go of this poisonous attachment, Nami would have to radically shrink and scale back its services. Those running the organization prefer self-delusion and maintaining the status quo.

    In this regard, the process of trying to oppose Nami and the disease model reminds me of my favorite quote from Macchiavelli:

    “It must be considered that there is nothing more difficult to carry out nor more doubtful of success nor more dangerous to handle than to initiate a new order of things; for the reformer has enemies in all those who profit by the old order, and only lukewarm defenders in all those who would profit by the new order; this lukewarmness arising partly from the incredulity of mankind who does not truly believe in anything new until they actually have experience of it.”

  22. Hi Sera! I skimmed your article, and we may agree that NAMI is very corrupt. But Nami isn’t the lady from League of Legends. That’s a different Nami. The Nami you posted is a character from the Japanese anime One Piece. She does love gold because she’s a swashbuckling pirate and naval navigator. But she also loves freedom on the high seas, so it’s not exactly the same.